Friday, September 18, 2009

This morning Israel took Anya to her September appointment for chemo and the preventative antibiotic. Today her port cooperated and she didn't have to have a spinal tap or other painful treatment - so in that regard, it was a great day!

The only difficult part of her visit was how completely hectic and busy it was there. Anya was originally put in a room to have her port accessed for treatment, where she & Israel were settled watching a movie. But because of the excess of patients she had to be relocated to the playroom. This may not seem like a big deal (or it may even seem like a good break) but it was overwhelming for Anya to be with over 10 other sick patients, their beeping IVs, and their families when she's not feeling her best. Guess ya gotta take the good with the bad. BUT we were so pleased to comfort her (and ourselves) with the fact that she only has to return there for chemo treatment ONE MORE TIME!

Because we are so close to the completion of chemo treatment, Anya's nurse educated Israel on Anya's future care. Here is some of the information they received:

Anya has her final IV chemo and preventative antibiotic on Oct 16th

Oct 23rd will be her LAST DAY of oral chemotherapy

Surgery for her port removal will be scheduled at her Oct 16th visit

After that she will take an antibiotic 2x daily, 2 days a week for five months to prevent infections that often occur when patients discontinue therapy

6-7 months after she discontinues chemo treatment, she may have a major growth spurt because oftentimes the chemo prevents normal physical growth

Although Anya's last chemo treatment is next month, she will return to the clinic once every month for the next year (and every other month for a year after that) for blood work. Her doctor needs to check her blood often to confirm that she has normal levels of various components in her blood since abnormal results could mean relapse.

AND after that she will have checkups at the "Survive and Thrive" clinic where they will monitor her for possible "late effects" of cancer treatment and provide important resources for her special needs as a survivor. We're not sure how often or for how long she will have checkups there but we'll cross that bridge when we get there.

65% of childhood cancer survivors will experience at least one late effect of treatment, but we're hopeful that Anya will be spared this additional trauma. Type of treatment, age, and gender all play major roles in a patient's risk for late effects and based on these risk factors, I would guess that she is at a lower risk risk based on her particular situation and treatment. A couple of the medications she has taken are known to cause certain health conditions, so we do pray for God's mercy and healing touch on her little body - we ask for complete health!

Obviously we're really excited that Anya's chemo treatment is coming to a close. She's such a happy child now, who often feels really well and we can't wait until she's back to 100%!

At this point, Anya is still somewhat nervous about the upcoming changes. She's worried about the "pokes" she'll have to receive every month for blood work since she won't have a port anymore. And the idea of having a surgery (for her port to be removed) has caused her some anxiety. But we trust that as treatment discontinues, and she starts to feel stronger and healthier and as the "pokes" become more routine that she'll be thrilled to be finished.

Friday, August 21, 2009

Today was Anya's August appointment which included a spinal tap to put chemo in her nervous system and regular IV chemo and preventative antibiotic.

We had intended for Israel to take her, but he has been suffering with an infection and though he shouldn't be contagious anymore, we didn't feel comfortable taking any chances of infecting any of those poor little kiddos with decreased immunity. So Samantha, Anya, and I got dressed and out the door by 8 so we could make it to Children's Mercy on time for Anya's appointment. (Super mommy to the rescue!) :)

Overall things went very smoothly - Anya was pretty upbeat before the spinal tap, her port cooperated, and the doctor said that she looked great. Unfortunately she was feeling pain again during the spinal tap - which isn't supposed to happen because they give her "sleepy medicine" - but I comforted myself with the fact that THIS IS THE LAST TIME WE HAVE TO DO THIS! It is so hard for me to watch her suffer...to feel so helpless to make things better so this reality is so exciting for me!

The other good news is that the doctors also give her a medication that doesn't allow her to remember the pain during the procedure, so if you asked her how the spinal tap went she would probably tell you "great!". Gotta love that medicine!

And I'd also like to "give a shout out" to the child life specialist at CM. She came in during the procedure today, and was such a big help - especially since I had Samantha there with me. She stroked Anya's head, spoke sweetly to her, and read a book to her that we had brought from home to make things as easy as possible on my baby. Thank you Jesus, for such loving people!

Wednesday, August 5, 2009

On Friday, July 31st, we welcomed baby Samantha Grace to the world! She was 8 lbs, 3 oz and only 18.25 inches...so she is a sweet little chunker. Wish we could show her off to you in person! Anya, Esther & Isaiah all love her to pieces...so fun watching them with her. Thank you, Jesus, for this precious gift!

And on another lesser note, we are in the process of buying our first home! It is only 3-5 minutes from our current house, but it is a little bigger and we are excited for this change! We'll be sure to post pictures after we close in three weeks.

July's appointment was just over two weeks ago now, and things went well. While Anya's port wasn't very cooperative, she wasn't in much discomfort and was in good spirits for most of the visit. As usual she received chemo and a preventative antibiotic through her port. And the nurse confirmed that we are still on schedule to discontinue treatment in October - so only a few more months to go!

Friday, June 5, 2009

What a morning! Anya's monthly appointment was scheduled for this morning at 8:30am. She received her antibiotic and chemo through her port and had a spinal tap to get chemo in her nervous system. Despite the fact that she wasn't allowed to have any food or fluids since last night, things went very smoothly until the spinal tap.

Before the spinal tap the nurse administered "sleepy medicine" which is supposed to be a pain killer, sleep inducer, and temporary memory eraser - all in one! Things were going well at first, Anya started to get sleepy and lay down but as the procedure started she was roused a bit more, and obviously was experiencing pain.

When the doctor first stuck in the needle (similar to an epidural needle, if you are familiar with those) Anya tensed up a bit. This made it more difficult for him to find the proper placement which made the procedure take more time and cause more discomfort. She started crying, and tears welled in her eyes, and fell down her cheeks.

There are few things that hurt a mother more than seeing their child suffer...it broke my heart. Those are the times when everything in you wants to start crying, but of course the best way to support your baby is to stay strong, and give loving gentle support.

Thankfully that was all over in about 10 minutes, and she was able to rest. She wasn't ever able to fall asleep, to "sleep off" the effects of the medication, but she did enjoy a couple episodes of "Sponge Bob" and her favorite treat - chicken noodle soup. So glad we only have one more of these type of months before treatment is over!

Monday, May 25, 2009

Anya's May appointment was a couple weeks ago, and things went very smoothly. Immediately after her appointment, the kids and I drove up to visit my family to celebrate both of my brothers' college graduations. Adam graduated from UT with a degree in Computer Science, and Alan graduated from Case Western with a degree in Computer Science and Psychology. I am so proud of both of them for all of their hard work!!

And this weekend, Israel and I are celebrating seven years of marriage! What a full seven years it has been!

On Saturday, Israel surprised me with an overnight trip to St. Louis. We had a great time going up in St. Louis Arch and to a couple other local attractions! And today, we celebrated Memorial Day and our anniversary with the kids with a visit to Union Station here in KC which included time in the Kids Science Center and a 3-D movie. What a great weekend!

Thursday, April 16, 2009

Here is a picture taken of our family last Wednesday after our annual Passover Meal. In place of a traditional Easter celebration, we celebrate the Lord's death and resurrection on Passover each year. It is a very special time for us to remember the bitterness of sin and our gratitude to Jesus for His deliverance as the Passover Lamb. Thank you Lord for your sacrifice!

The good news is that we've mostly recovered since the time of my last post! And the other good news is that Anya is done with her April steroids. She was feeling exceptionally well on the Saturday she took them, so we were able to attend church as a family and have guests over Saturday night. By Sunday morning she was feeling pretty rotten, but thankfully that is all just a memory. One more month done, only five more to go! Whoo-hoo!

Monday, March 23, 2009

Fortunately, Anya was able to return home after her appointment this morning. Her lab work showed that her ANC has dropped since her last visit a week ago, but it is still in the safe range - praise the Lord! And the radiologist inspected her xrays, and said that it looks like there is no fluid in her lungs - yeah!

There is still a chance that Anya would have to return to the hospital sometime in the next few days if one of the following happens:

If the doctor who is also going to review Anya's xrays finds something that the radiologist missed.

If the doctors find that something is growing in the cultures they took this morning anytime within the next 72 hours.

Obviously we are glad that Anya didn't have to stay in the hospital, but we are still praying that she would get well quickly. She is pretty sad and miserable, the poor thing.

Esther also visited the doctor this morning, and was prescribed an antibiotic for her eyes because she has some type of infection in them. The doctor thinks that it is just whatever virus that is causing the rest of her symptoms but wants to treat it just in case because she is so uncomfortable.

For a few days, Anya has had a little cough but yesterday afternoon she developed a fever, sore throat, heavy chest, and body aches. Esther, Isaiah, and I have also been feeling under the weather but because Anya is on chemo which can decrease her ability to fight infection, she has to make a trip to the clinic this morning for blood work and a chest x-ray. They are hoping to find that her white blood cell count is high enough to fight the virus and that there is no fluid in her lungs.

I'm not really sure what will happen if they do find fluid in her lungs, but she is worried that if they do, she will have to have more breathing treatments. When Anya was originally admitted to the hospital, she was very sick and simply terrified of everything that was happening to her. There were many things that were painful and extremely uncomfortable, but for some reason she has attached a lot of the memories of pain and discomfort to the breathing treatments. Whenever we talk about her first time in the hospital, she mentions how terrible those treatments were even though in and of themselves they aren't that terrible. But because she remembers them being so awful, we are praying that there would not be fluid in her lungs and that she wouldn't need breathing treatments.

Wednesday, March 18, 2009

Anya's rash has now worsened and become pretty itchy. There are times when she just cries because it itches her so badly. The doctors suggested that we try Benadryl, and it seems to help - especially when we use the higher end of the allowed dosage.

While getting dressed for the day yesterday morning, Anya asked if I could put her hair in pigtails. After I finished, she asked to look in a mirror and for the first time saw the rash covering her nose and cheeks. In a frustrated tone she said, "I look ridiculous with this rash on my face!" As a mom, of course, I tried to reassure that she was beautiful and that the rash didn't distract from that.

Later I shared the experience with Israel and he said that she had also asked him if she still looked pretty with the rash on her face. Of course, he reassured her as well but was now realizing our need to try and use this and similar experiences to teach her that there are times when our external appearance is affected by things like sickness or tragedies, but that we need to keep such things in perspective because our physical appearance is really such a small part of who we are and what we are supposed to be. I was so thankful for that realization!

So later as Anya and I were laying down for an afternoon nap, I took the opportunity to discuss the values of external and internal beauty and how it directly applied to her situation. I reaffirmed that she was a beautiful girl, but that we needed not to be so focused on external appearance knowing that life experiences may negatively affect the way other people think we look but that what is most important is what is in our heart. And I had to take the opportunity to apologize for being inappropriately concerned with some of the physical changes that come with pregnancy and aging and told her that I would try to be a better example in the future. Wow, what a lot to try to explain to a little five year old girl. But I think she got it, and I'm thankful Israel saw this important opportunity!

On Sunday, we discovered a rash developing under Anya's arm on her rib cage. She was only slightly itchy so we decided to wait to report it to her doctor on Monday, during her scheduled follow-up lab work.

Once we arrived at the clinic on Monday, in order to protect the other children, Anya was placed in an isolation room and wasn't allowed to go into the playroom. And as a mom who is sometimes on the other side of the fence - I was very grateful!

After the nurse inspected Anya and the lab results came back, the nurse told us that the rash was probably a viral thing and that it was probably what caused the abnormal spike in her enzyme levels last week. They also said that her enzyme levels were now much closer to normal (only slightly elevated). All of the other numbers they check were in a safe range, so the doctors told us to put Anya back on her daily chemo meds.

Thursday, March 12, 2009

Last Friday was Anya's scheduled monthly appointment. Most of the morning before she arrived in the procedure room, she was crying because she wasn't able to eat and was tired. But thankfully she was able to fall back to sleep after she & Israel got settled in the room, and woke up feeling much better after everything was finished. And by the time she got home, she was cheerful!

Later that day we received a call from Joy, Anya's nurse. Apparently Anya's liver enzyme level was elevated which means that her liver was fighting to clear something out (which probably explains why she had been so tired the couple days previous). According to the doctor it was most likely trying to clear out whatever virus she had in the last month or so.

Because her daily chemo is filtered through her liver and the doctors don't wish to work her liver more than necessary, they asked us to discontinue her daily chemo medication (while continuing her five days of steroids). They also asked us to bring Anya back in on Monday the 16th for more lab work so they can check to see if her levels have returned to normal, and to see if they can detect a virus that may have caused the problem.

Anya completed her five days of steroids on Wednesday morning, praise the Lord! Some rounds of steroids are harder than others, and I would say that this one was more difficult than some. She was up through the night unable to sleep three different nights - poor thing! One morning she even apologized for having to wake me up in the night - what a sweet princess!

Wednesday was the first night in as long as I can remember that she didn't have to take medication. I must admit that it was kind of nice. Of course, in the big picture, we want her to be able to take as much chemo as possible to make sure that the leukemia does not return. But in the short term, the break was great! So we'll enjoy these few days of medicine free living as much as possible!

Monday, February 9, 2009

Anya's February appointment was Friday at 9:30am. She received intravenous chemo, a preventative antibiotic, and had lab work. The lab results were great! Anya's counts are back up, and the doctor has allowed her to go back onto her full prescription of chemo! Praise God!

Of course since her appointment was Friday, Anya also started her steroids on Friday. I usually prefer to keep her home from church while on steroids but Anya was persistent that she wanted to go to church...so we did. How can I say "no" to a child begging to go to church?

Overall she did really well there, though during the singing she had to lie down and she was pretty fussy and uncomfortable for the rest of the service. I offered several times to take her home, but she didn't want to go so we just toughed it out.

On Sunday afternoon Israel was able to take Anya to a friend's house to play since her counts have gone back up. But she was so tired and sensitive that I don't think she had as great a time as we had hoped. When she isn't feeling well noise and light can really bother her.

So both yesterday and today, for the most part she has wanted to rest, watch TV (more specifically "Little House on the Prairie"), eat the usual salty fatty foods, and read books. Poor thing, for her sake, I can't wait till we're done with steroids!

Saturday, January 24, 2009

Israel took Anya to the clinic on Friday morning for her follow-up lab work. Unfortunately her ANC is back down (.628 or 628) and so again she is susceptible to infection.

She has a little cold right now, and we are thankful that it has not developed into something worse. She has no fever, but if that were to change we have to call the doctors immediately so that they can determine if she needs additional medical care.

The bummer about all of this is that we have to be real cautious with where we take Anya and who she is around. We allowed her to go to church today, but she wasn't able to play with the other children or mingle around with people. During the greeting time, she had to stay in her seat and it broke her little heart...this of course, breaks ours.

And we were supposed to have people over this evening for a Young Adult Meeting, including a couple kids, but we had to change the location of the meeting since Anya shouldn't be around a lot of people. Again...bummer.

The good news is that her other counts are within the acceptable range, so we don't have to fear relapse. Her low ANC is a result of her body trying to fight off all of the seasonal colds and other infections that come around. She is still on a half dose of the chemo and will be reevaluated on Feb 6 to make sure that the ANC count is recovering, or at the very least staying above .500. Thanks again for all your prayers! And please continue to pray that her counts would be high enough that she would be able to play freely with other kids and spend time with the folks that she cares so much about.

Thursday, January 15, 2009

Anya went in for bloodwork this morning and her ANC has gone back up into the normal range, confirming the doctors' suspicion that the problem was simply lowered counts as a result of fighting off infections, and nothing more serious. We start Anya back on her chemo this week at about half the dosage and will have another appointment next week to make sure she is ready to go back to full strength. Her color and energy have returned throughout the week (she was looking pretty pale and fatigued over the weekend) and she is happy to be off of the steroids until next month.We are so thankful for all the prayers and support this week. We are also again thankful to God that this delay was so short. So many children suffering from leukemia spend weeks at a time in the hospital with infections while their treatment is delayed. This week-long break in the treatment is the first delay we've experienced since we returned home in April and we were able to spend it at home with Anya in good health, despite the fact that she was essentially functioning without an immune system. Praise God for so many healthy months!

Friday, January 9, 2009

I (Israel) took Anya in this morning for her monthly appointment and quarterly spinal tap. Thankfully the spinal tap went very smoothly! The pain medication was regulated, and Anya lay calmly throughout the whole procedure! There was none of the resistance or crying that had occurred with the first two since we returned to KC.

This was a HUGE blessing for me. While Anya does not remember any of the spinal taps, even when it hurts, it has been very difficult for me to watch her suffer while the doctors attempted to find the ideal dosage of the pain killers (which Anya refers to as her "sleepy medicine" and "silly medicine").

While the doctors said that Anya looked great overall, her Absolute Neutrophil Count (ANC) was down to almost zero (.01). This means means that she has very few white blood cells to fight infection. Since chemotherapy kills white blood cells while killing leukemia cells, the doctors instructed us to withhold her chemo for the next week. We will take her back on Thursday for blood work to see if her counts have recovered.

According to the doctors, if all of Anya's blood counts were lowered, there would be reason to believe that the leukemia had returned. Because only her ANC has been affected, they suspect that in the midst of cold and flu season Anya's body's white blood cell supply has been tapped out by the combination of chemo and fighting illness. While Anya has not been symptomatic the low count may indicate that her body is fighting something.

So for this week we're back to trying to keep things as sterile as possible and limiting Anya's exposure to public places. And we are praying that Anya is in fact still in remission, and that the white blood count will increase by her next appointment.

She begins steroids tonight for five days, so she won't be fit to go out and do a whole lot anyway, but it is disappointing in that she planned to attend church tomorrow and have friends over tomorrow night. That will have to happen another time. We had begun to forget what it was like to quarantine ourselves...this week should remind us and help us to be even more grateful when her counts go back up and she can come and go as she pleases.

As always we want to express our gratitude for your ongoing love and support, and solicit your continued prayers. This week would you join us praying specifically that Anya's lowered count is not an indication of a serious problem, and that things will be back to normal when we go in next week?

Also, I plan to travel to northern California on Friday to preach for a special service there. Please pray that God would give me safe travel and the words to speak as I minister. We love you all.